This is Issy, side-sitting by herself for two whole minutes on Monday last week, using her weaker right hand and arm for support. She has never managed this before. See how straight her spine is? Usually, she’d keel over in seconds. Moments like that are sheer nourishment for the heart and soul.
Like any child with an evolving condition, Issy’s developmental journey comes in not just peaks and troughs, but also twists and turns and nooks and crannies. Just because she’s reached a milestone, doesn’t necessarily mean a swift move onto her next.
Neither can we guarantee another one. The standard child development timeline should read something like this: sitting-crawling-cruising-standing-walking (making allowances, of course, for those toddlers who either skip the crawling stage, bottom-shuffle – like I did – or leave everything to a certain age before they run through all their milestones in one fell swoop).
Not with Issy. Instead, she is encouraged to focus on whatever area of development she feels most comfortable with, while her Conductive Education teacher uses a mix of gut instinct and trained acclimatisation to try and identify which one that is, and build on it.
It is Issy’s prerogative after all, not ours, to manage her disabilities on a day-to-day basis. She is the one living in her body, not us. The self-awareness she needs in order to motivate various parts of her body into action is inconsistent, and fluctuates from day to day. That’s why her milestones can seem unconnected to each other – as if she’s going back and forth in her study of the child developmental manual almost aimlessly.
Those of you who have ‘liked’ our Facebook page since November 2011, for instance, will know about the incredible day when Isobel pulled herself up to standing – bringing most people in the room to tears:
Then there was those fabulous first steps in February 2012:
From which she progressed to this, three months later:
Which is all and well good, except… Today, Issy still isn’t walking independently. Neither is she pulling herself up regularly.
Thing is, whatever her intent, Isobel’s movements will always be affected by CP. Her efforts to put in everyday practice everything that she’s learnt in Conductive Education will always be influenced by it.
Some days she’ll want to just let things be and leave the battle for another time. (Indeed, at her session virtually the next day following her landmark sit, Isobel was floppy and didn’t perform.) Living with CP is hard work. This would probably explain why some adults with the condition are walking around playing golf one minute and in a wheelchair the next (and why ATOS assessments for disability benefits are so lacking in perception and common sense).
On top of that, the cognitive impairment caused by Isobel’s past seizures calls into doubt her ability to retain her learning. Even though she is now nearly four, we still have no way of knowing if she has logged it into her memory permanently; she hasn’t validated it.
As I type, Isobel remains a girl with potential. It may be years before we finally crack on what it is. So let’s not use her achievements to raise our expectations of our darling little girl. Let’s just enjoy them, if and when they happen, as isolated pieces of heart-warming nourishment in their own right.
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